The XLH Network, Inc. does not endorse or critique specific clinical trials, and does not counsel individual patients either for or against participation in any specific clinical trial. Prospective volunteers should always carefully review the clinical trial's informed consent documentation and protocol, and discuss the pros and cons of their participation with trusted advisers, including their health care providers and family members. The NIH website (clinicaltrials.gov) offers some good questions to consider while deciding whether to enroll in a clinical trial.
Efficacy and Safety of KRN23 Versus Oral Phosphate and Active Vitamin D Treatment in Pediatric Patients With X Linked Hypophosphatemia (XLH) (PIXLES)
Click here for more information at www.clinicaltrials.gov.
Study of Joint Replacement in Individuals with X-Linked Hypophosphatemia
Online questionnaire for men and women aged 18 or older with X-linked hypophosphatemia (XLH) who have had a hip or knee replacement. The purpose of this questionnaire is to learn more about joint replacements in patients with XLH. With the information gathered, we will be able to educate clinicians about joint replacements in patients with XLH.
Compensation is offered for eligible participants by way of a Starbucks gift card.
Study HIC#: 6316
Dr. Carolyn M. Macica
Contact Information: XLHPainStudy@quinnipiac.edu
Ultragenyx Online Survey
Ultragenyx Pharmaceutical, Inc. is sponsoring a research study to better understand how XLH impacts the lives of affected children and adults. The study consists of an online survey that asks questions about your experience with XLH, including how it was diagnosed, what symptoms and complications you (or your child) have experienced, how the disease has been managed and how these events affect your daily life. Anyone interested in participating should click here to learn more about the study.
Shriners Hospital for Children - A study to learn about XLH and HPP during adult life.
Click here for additional information.
© 2011, The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers to a mailing list and/or members of a forum for The XLH Network Inc. A listing of XLH research is available. Please read our full disclaimer.